Making Strides in our “little corner” of the Spinal Muscular Atrophy (SMA) WORLD

We were deeply saddened by the loss of Diana Casares this past week. Diana was almost two years old and had SMA Type 1 like Sophia. the Casares’s lived very close to us here in NY, and our families had become close friends ….Though Diana was not here very long, she made a huge difference to the SMA Community here on Long Island. Since Sophia’s diagnosis Vinny and I struggled to find a local hospital that would be “on board” with the SMA protocol……over the years we heard horror stories about the treatment of SMA Families at certain local hospitals. Over the last two years Denise and Marcelo dealt with the same type of situations at some of our local hospitals, Diana had a few bad illness and after her poor treatment Denise and Marcelo took it upon themselves to find a hospital that would embrace SMA Protocol. Last year during one of Diana’s illness’s we received a call from Denise that Diana was at Winthrop Hospital battling a respiratory illness. Immediately we asked how the hospital was treating her, and to our surprise Denise said great…Even though they were not familiar with SMA they were willing to learn. This was a HUGE stride……most Dr.s we have encountered have the attitude that “they know it all” and here were a group of health care professionals who were admitting, “we dont know SMA” …..help us learn……Denise brought all her paperwork on the SMA Protocol and got Dr. Schroth on the phone to help guide Diana and Winthrop through this illness safely.

Soon after we heard this news Sophia became very ill with a UTI infection……after hearing about Diana’s positive experience at Winthrop we packed Sophia up and went straight to Winthrop ER……we entered the ER and told them about Sophia’s High fever and Heart Rate and that she had SMA, and needed to be kept isolated….No questions asked they immediately brought us to a private ER room to be evaluated. Soon after Sophia was admitted to the PICU (pediatric Intensive Care Unit) The PICU was in a private end of the building and every patient had a private room. Sophia received excellent care and during our stay we met with the Chief Pulmonologist and the Chief of Intensive Pediatric Care. We told them that the reason we brought Sophia in was because of Baby Diana’s positive experience, they all knew Diana very well, and commented on how Denise and Marcelo were amazing proactive parents. We spoke more about Dr. Schroth and they were all so willing to meet her and learn about SMA respiratory care.

Soon after we were back at Winthrop for Sophia’s Trach surgery, and through our two week stay the Pulmonary Dept was constantly working with Dr. Schroth to help give Sophia the best care.

Recently we were overjoyed to here that Dr. Schroth was making a two day trip to NY, (as if she is not busy enough) to meet and Teach the Winthrop Pulmonary Dept about SMA Protocol. We have heard that this experience has been extremely positive and everyone was eager to learn. Dr. Schroth is one of the best in SMA Respiratory care and we are so excited that Winthrop and Dr. Schroth were able to make this important meeting happen.

So baby Diana even though your stay on this earth was brief, you have made a huge difference, none of this would have happened if you and your mom and dad had not paved the way. Thank you for finally helping us all have a Long Island hospital on board with SMA Protocol!!!!

Dear Cath~
Such a heartwrenching story~
i cried thru~out~
It is so great when health professionals react
with humility and open arms~!
You have always written these articles with love and kind words…
Little Diana will certainly be missed by all~<3